Running Header: CHARACTERISTICThe Characteristics of Autism
Courtney Danze
Benedictine CollegeAutism is a disorder that occurs in children, usually before the age of three, which affects the development of the child’s verbal and nonverbal communication, social interaction, and academic performance (A. Turnbull, R. Turnbull & Wehmeyer, 2010, p. 302). Most children with autism develop normally in appearance, but it is through their behaviors they differ from typical children. These behaviors include the children’s engagement in repetitive activities and stereotyped movements, resistance to changes within the environment and daily routine, and the display of unusual responses to sensory experiences (Turnbull, et al., 2010, p. 302). As the number of children diagnosed with autism has increased it has become important to gain an understanding for the typical behaviors and characteristics of these students, in an attempt to provide them with the educational resources and services needed to become high functioning within their academic performance.
Autism is often used as the general term to describe the group of developmental disorders that occur within the brain. These disorders are known as Pervasive Developmental Disorders (PDD) or otherwise known as the Autism spectrum (“What is Autism”, 2009). The Autism spectrum, made up of five conditions that have their onset in early childhood, ranges on scale from mild to severe delays in development. These five early onset conditions include autistic disorder, Rett’s disorder, childhood disintegrative disorder, Asperger’s disorder, and pervasive developmental disorder not otherwise specified (Turnbull, et al., 2010, p.203). Pervasive Developmental Disorders are referred to as such because of the development during early childhood and the variety of areas that are developmentally affected (“Pervasive Developmental Disorder”, 2004). Although these disorders are pervasive, they do not necessarily affect all aspects of the child’s development. For example, in some less severe cases of autism a child may develop normal speech but have problems in areas such as social interactions and behavior (“What is Autism”, 2008). It is important to keep in mind that PDD is not one disorder, but rather a category under which a wide variety of developmental delays are placed. Autism is the most severe pervasive development disorder, primarily due to the disturbance in an individual’s ability to relate to others and a delay in language and cognitive development (“Pervasive Developmental Disorder”, 2004).
Autism has continued to increase in the number of diagnosis worldwide, according to a recent study conducted by the Centers for Disease Control and Prevention the incidence of being diagnosed with an autism spectrum disorder is ten times more likely than it was ten years ago. In today’s society one out of every one hundred and fifty students are considered to have some form of autism, and many experts believe that the number may continue to rise (“Autism Rates”, 2004). As the appearance of autism becomes more common, it is often considered that either the disorder has rapidly increased in the number of children affected, environmental influences, or the disorder has become more easily identifiable. There are no established explanations for such an increase, but some studies suggest that boys are more likely than girls to develop autism and receive the diagnosis three to four times more frequently. Within the United States alone, one out of ninety four boys is diagnosed with autism (“What is Autism”, 2009).
Autism, however still remains one of the greatest mysteries of medicine. More than 25,000 United States children were diagnosed in 2008, which is more than the diagnosis of new pediatric cased of AIDS, diabetes and cancer combined, but scientist and doctors still know very little about the neurological disorder. There is no means of detecting autism through test or brain scans; diagnosis of the disorder relies solely on behavioral observations and screening (“Autism Rates”, 2004). The increases in the frequency of autism over recent years have increased the concern over the possibility of the disorder being linked to environmental causes; however the exact cause of autism is still in question today.
In today’s society the cause of autism is in great debate. Many believe that the increase in diagnosed cases is a result of greater awareness to the condition, or attributed to an increase in screenings, better recognition, increased diagnosis from doctors, and the schools apprehension in treatment. Whereas, others believe the prevalence could be caused by genetics or environmental factors such as pollution, food additives, or even childhood vaccinations may play a role. With the widely spreading concern that vaccinations made with Mercury, which contain preservative thimersal, are behind the epidemic of autism, it has never been directly linked. In recent studies the thimersal in childhood vaccines could contribute to or cause neurological disorders, such as autism and other pervasive developmental disorders. The basis for this claim was a study in which a mercury compound was introduced into the blood stream of young children. The study resulted in the observation of a possible underdevelopment in the immune and neurological systems of these children. The Institute of Medicine however has found no “casual relationship” between autism and childhood vaccines, the connections have not been proven (“Autism is on the Rise”, 2004).
On the other hand, autism has been linked in small number of cases to genetic disorders such as Fragile X, Tuberous Sclerosis, and Angelman’s Syndrome. Such environmental agents, infectious and chemical, exposed during pregnancy have also been linked to an increase in autism. Evidence has also suggested that autism may involve inflammation within the central nervous system, and studies have illustrated that the immune system can influence behaviors related to autism (“What is Autism”, 2009). However, the definitive cause of autism remains unclear and can only be based upon the observations of the child and their surrounding environment.
As autism is a developmental disorder, it typically affects a child before the age of three and can interfere with the development of communication, social interaction, and learning approaches (Turnbull, et al., 2010, p. 302). As the onset of this disorder occurs within early childhood it is important to have awareness and the ability to recognize the early warning signs of autism. Such characteristics which might be displayed by a child in early childhood are the inconsistent reaction to sounds, such as not responding to their own name being called. Others include failure to imitate simple movements like waving, a delay in the development of spoken language, and failure to act in a reciprocal manner by showing only an interest in themselves, which also includes the display of not being interested in interacting with other children (Stone, 2004).
As mentioned early there are a number of disorders that fall within the autism spectrum, these include autistic disorder, Rett’s disorder, childhood disintegrative disorder, Asperger’s disorder, and pervasive developmental disorder not otherwise specified(Turnbull, et al., 2010, p.203). With autistic disorder being the most severe and common of the pervasive developmental disorder, it pertains mainly to the development of disturbances in interactions with others and delays in language and cognitive skills (“Pervasive Developmental Disorder”, 2004). As for Rett’s disorder which becomes evident within the second year of life, it is the most physically disabling disorder within the autism family. Rett’s Syndrome destroys the development of speech and normal movements, creating cognitive impairments and problems with socialization for the diagnosed child. Children affected by this form of autism experience regression in the development of expressive language and hand use (“Rett Syndrome”, 2004).
Covered within the autism spectrum is childhood disintegrative disorder, which displays itself in development at three of four years of age and the child has experienced normal development up to the point of onset. The child will begin to show regression in academic, social, and language functioning which declines form their previous behavior in these areas. Childhood disintegrative disorder is also commonly associated with severe cognitive impairments and must contain the features of autistic disorder in at least two of the following areas: inability to interact socially, incapable of communicating needs, prefers solitary play, restricted repetitive and stereotyped features in behavior. A loss of skills must also occur within two of the following areas: expressive or receptive language, social skills and/or flexible behavior, bowel or bladder control, play, or motor skills (“Childhood Disintegrative Disorder”, 2004).
Asperger’s Syndrome is also classified as a Pervasive Developmental Disorder because it deals with the development of the personality and is similar in the abnormalities of early childhood autism. Most children whom become diagnosed with Aspergers are awkward within social situations, with the inability to make eye contact with others, and display abnormal behaviors. Characteristics include the lack of facial and emotional expression and the practicing of routines and rituals, some children express the need to follow a certain order of events (“Asperger’s Syndrome”, 2004). The last disorder on the spectrum is Pervasive Developmental Disorder not otherwise specified a condition in which the child exhibits impairments in the development of reciprocal social interactions. These interactions involve verbal and nonverbal communication, and most often autistic tendencies are present. These children also partake in self injurious behavior as a form of self stimulation, and also seek repetitive and ritualistic behaviors as a means of sensory stimulation (“Pervasive Developmental Disorder”, 2004).
Although there are a number of disorders set among the Autism Spectrum, autism can most often be characterized by distinctions and differences within development of communication, social interactions, behavioral traits, and learning approaches. First within the development of communication, children with autism can range in variety from non verbal communication to an extensive use of language (Turnbull, et al., 2010, p. 302). The communication of children will vary in the use of unusual gestures, inability to make eye contact with others, and difficulty in expressing non verbal communication (“Characteristics of Autism”, 2004). Additional characteristics include the ability to focus attention on one topic only and the demonstration of repeating or echoing other people’s language, which is known as echolalia (Turnbull, et al., 2010, p. 303).
Autism is also largely characterized by a child’s delay in social interactions and social skills. According to the American Psychiatric Research Council, four criteria are in existence for diagnosing social development in individuals with autism. These criteria are as follows: the impaired use of nonverbal behavior, a lack of peer relationships, failure to spontaneously share enjoyment, interest, and achievements with others, and the lack of reciprocity. Children with autism most often posses the theory of mind, meaning they are unable to comprehend that their thoughts differ from others and therefore it creates a difficulty in developing relationships with their peers (Turnbull, et al., 2010, p. 303-304). Children demonstrate these difficulties in a number of visible ways. They can display the tendency to play with toys in an unusual or stereotypical ways as well as engaging in inappropriate laughing or giggling. Most often if play does occur it lacks imaginative qualities of social play and children do not interact with the children they are surrounded by or withdraw themselves entirely from social situations (“Characteristics of Autism”, 2004).
Other distinctive characteristics commonly associated with autism is the display of unusual behavioral traits, these behaviors include repetitive and stereotypical behaviors as well as problem behaviors. Behavior differences are classified by the display of restricted interest or the obsession with one interest or object. The child may also partake in unreasonable routines or stereotypical and repetitive behaviors of motor mannerism. Such behavior includes hand flapping, finger flicking, and rocking. Children with autism may also display a fascination with movement and a resistance to change (“Characteristics of Autism”, 2004). Problem behavior is another characteristic of such unusual behavior. The disorder may cause the child to participate in self-injurious behavior and aggression. Self-injurious behavior includes head banging, biting, and scratching, whereas aggression involves these same behaviors but is rather direct towards others (Turnbull, et al., 2010, p. 305). These behaviors may not only be visible characteristics of autism, which help in the classification of the disorder, but could be caused by a number of outside forces. For example behavior of the child may be a direct result of hypersensitivity or hyposensitivity to sensory stimulation, difficulties in understanding social situations, or the result of change or anxiety (“Characteristics of Autism”, 2004).
Lastly autism is characterized by the differences the diagnosed children display in their intellectual functioning, or differences in learning style. These children differ from normally developing individuals, and range in ability from gifted to mental retardation. Out of all the children diagnosed with autism disorders, approximately 64 to 70 percent of children and youth have an intellectual disability (Turnbull, et al., 2010, p. 306). Children with autism experience defects in their cognitive functioning which cause them to experience difficulties in paying attention to appropriate signals or information, difficulties with receptive and expressive language, defects in social cognition meaning they lack the ability to share their attention and emotions with others. Other characteristics include the inability to plan, organize and solve problems (“Characteristics of Autism”, 2004).
With the inclusion of a number of disorders in the Autism Spectrum, it is easily understood why so many different characteristics are associated with autism. Autism is mainly characterized through the developmental delays in the area of communication, social interactions, a display of unusual behaviors, and differences in leaning approaches. Although these characteristics are most commonly associated with the disorder, not all of the characteristics apply to every individual. Each individual is unique, depending upon the type of pervasive developmental disorder they are diagnosed with. Students can be classified into five specific disorders as follows: autistic disorder, Rett’s disorder, childhood disintegrative disorder, Asperger’s disorder, and pervasive developmental disorder not otherwise specified (Turnbull, et al., 2010, p. 302).
It is important to know these disorders among the Autism spectrum and know the common characteristics of autism in an attempt to better understand students’ diagnosed with such disorders. With understanding the characteristics of students with autism comes the understanding of the necessary services and adaptations that need to be provided within the classroom in order to help these students receive the best education possible based upon their ability.
Characteristics of Autism
Rachel Toner
Benedictine College
Autism is a fascinating disability, very different from all other disabilities. It begins in Early Childhood and is a mental condition that is characterized by great trouble in communicating and developing relationships with other people. Children tend to struggle with using language and abstract concepts. If a child is to obtain Autism, it would more than likely be before the age of 3. (A. Turnbull, R. Turnbull, M.L. Wehmeyer, 2010, p. 302).
Some changes a parent may start to notice within their child could include delayed development, failure to act in a reciprocal manner and lack of interest in other children. For example, a child could have a vocabulary of less than fifty words or a child would only want to play with itself and not feel comfortable around other children. (“Bright Tots”, 2004).
Red flags of an Autistic child are incidents that any parent needs to look for in their child. If the child doesn’t have babbling by 12 months or any age, this is an indicator. Finally, having no back and forth sharing of interest in children, smiles, gestures, etc by six months or after. (“Autism Speaks”, 2009).
Autism is a severe form of a broader group of disorders referred to as pervasive developmental disorders. According to the American Psychiatric Association, there are five different conditions in being Autistic. Autistic Disorder, Rett’s disorder, childhood disintegrative disorder, Asperger’s disorder, and pervasive developmental disorder not otherwise specified. These can also be known as autism spectrum disorder. (Turnbull, et al. 2010, p. 302). This spectrum will be touched on throughout this paper.
Causes of Autism are a passionate topic that many parents disagree upon, often times causing divorce due to differences in opinions. There are most likely underlying reasons and immediate triggers. People with Autism can often times rely on ritual and structure. Most children with Autism can find their own ways of structure, but the world is puzzling. Therefore, a child could develop a learning disability if they are not taught correctly. This is an ongoing circle of the world becoming confusing and overwhelming.
Individuals with Autism can form built up frustration, anxiety etc. from not being understood and not understanding their surrounding world. A child will have to challenge their Autistic behavior if their parents are too busy working or cannot provide them with the resources their child needs to help them through.
Interventions have two major points of challenging behavior. First, recognizing difficulties specific to individuals that trigger their problems. Stated before was the world factoring in to an Autistic child’s life and the relationship a child can form. Secondly, a child may have difficulty in processing what certain conversations mean.
There are four areas for support of those with Autism to overcome any difficulties they may have, including Educational, Behavioral, Drug and other inventions. None of which are impossible to fix and they can all be effective when learning new skills or abilities. (“Bright Tots” 2004).
As for the “vaccine theory”, The CDC estimates 1 in 166 children have Autism (4 to 1, males over females) and 1 in 6 have some form of neurological developmental delay. According to Bright Tots, the reason for the high statistics is children were receiving extraneous amounts of the safe dose of mercury in their vaccine shots. Also, some children were more at risk due to poor immune systems and children not being able to get rid of the mercury.
Sadly enough, the mercury was removed from the vaccines, but Autism rates continue to increase. The MMR vaccination is another one that parents claim their child was “normal” until they received it. The link is usually due to the time frame of the child getting the vaccine, and when the signs of Autism start to arise. Still today, there is no proof that vaccines are possible causes of Autism. There have been many lawsuits and major disagreements about this unfortunate topic. Several credible scientists, government agencies and the medical community have stated there is no connection between autism and mercury once used to preserve vaccines.
The Centers for Disease Control says, "There is no convincing scientific evidence of harm caused by the low doses of thimerosal in vaccines, except for minor reactions like redness and swelling at the injection site". (“Bright Tots”, 2004).
The diagnosis is not done based on medical tests, but rather other behavior you see differently per say in a parents’ child. If a parent is concerned about their child, they should have them screened immediately. The parents need to take a look at the milestones where their child should be standing, and if their child is not meeting them, take the child in to the physician. (“Autism Speaks”, 2009).
Unfortunately, sometimes physicians do not believe parents, so the parents need to be very educated about where their child should be at for their particular age group. The MCHAT is a list of simple questions about your child and the answers determine whether or not they should be referred to a specialist. (“Autism Speaks”, 2009).
As I touched on before, there are five disorders on the Autism spectrum. Autistic Disorder and Pervasive Developmental Disorder are the same, just different ways of describing Autism. Development means the problem is found early in the child’s life and pervasive describes the areas affected. There is a greater amount of children with Autism Spectrum Disorder than there are with Autism. Pervasive is when a child has a delay in social, language, motor, and/or cognitive development. Some children will hurt themselves to gain attention to escape from the world. Early intervention is very crucial in gaining communicative and cognitive skills. “ABA”, “Floor time”, and “Social Stories” are all helpful in doing so. Autism is the most severe of the disorders.
Rett’s disorder is a complex neurological disorder classified as a pervasive developmental disorder and many argue is it is a possible misclassification. This disorder will usually not come out until the child’s second year. A classic sign of Rett’s disorder is repetitive handwriting and their head growing slower than body. Symptoms are usually cognitive impairment, seizures, sleep apnea, etc. Girls are very prone to gastrointestinal disorders. 80% have seizures and 50% no speech. Rett’s syndrome is very rare, affecting 1 in 10,000 girls. There is no cure, but through medication and therapy, there can be help formed. (“Bright Tots”, 2004).
Childhood disintegrative disorder starts at a bit older of an age group, 3 or 4 years old. Slowly the child moves backwards in progress in language, academics and socially. It also goes along with severe cognitive impairment. Behavioral features and loss of skills will occur in multiple areas that can be compared with an everyday child. Some signs will be delays in developmental motor skills and significant loss of skills they have already achieved. They will have very little social interactions, looking in multiple awkward ways. Some causes are mainly unknown, but there has been link to neurological abnormality. It has been linked to other conditions. Treatment can be done through behavior therapy and medication. (“Bright Tots”, 2004).
Asperger’s syndrome describes individuals who have significant challenges in social functioning but do not have significant delays in language development or intellectual functioning. (Turnbull, et al. 2010, p. 302). Typically, a child would lack facial and emotional expressions, except for strong emotion. Vocally, they are repetitive and dull. For example, they may say the same story repetitively. The child would be very insistent on routine, become attached easily and are quite uncomfortable in new places. They will have odd forms of self-stimulation early on as well. Asperger’s is one of the high functioning forms of Autism and is possibly hereditary. (“Bright Tots”, 2004).
Early childhood intervention is a support system for children with disabilities or delays and their families. The point is to provide appropriate therapies for children with disabilities and help them to succeed to their full potentials. This process is important for launching children in to IDEA’s four outcomes, which are Zero reject, Nondiscriminatory evaluation, Appropriate education, and Least restrictive environment.
Social stories are useful for preschool and older children with Autism because they learn how to interact socially. These stories are written by educators, parents or students and describe appropriate responses to social cues and other such cues. Circumstances such as understanding people’s actions, what is cool and un cool, manners, etc. need to be taught otherwise the student will be missing out on a crucial part of life, communication. If directive, descriptive, perspective and control sentences are used, those with Autism can really improve their communication and outbreak skills. Take for example, a boy who is 5 years old. After using social stories, he decreased the number of tantrums at home. These social stories improve young children with Asperger syndrome and Autism. (Turnbull, et al. 2010, p. 20, 318, 319).
Characteristics are difficult to pick out physically of children with Autism, but developmentally and internally they are much different than an average child. The four major categories include Communication skills, Social interaction characteristics, unusual behavior traits and Learning approaches.
Communication has a large range of differences among individuals. Some Autistic children are non-verbal or some are overly verbal. Some difficulties they will encounter would be unusual use of gestures, lack of eye contact, awkward body positions, unusual pitch or tone of voice, repeatedly talks about one topic and can’t switch topics, or interrupting at an inappropriate time. Almost all Autistic children have difficulty in comprehending verbal information.
Socially, an Autistic child will have difficulty with forming relationships, not because they don’t want to, but because they have difficulty understanding what it is like to be socially “normal”. (“Bright Tots”, 2004).
Unusual behaviors would be repetitive behavior, involving repeated movements and verbalizations. For example, hand flapping, persistent attention to parts of objects and strict adherence to routines. The student would use their repetitive behaviors to show they are bored. Sadly, these behaviors are distracting to themselves and other people. Predictability and structure provide their security. Disruptions are not good for an Autistic child’s environment and they will become very unhappy.
Behaviors can be problematic when a child is self-injurious and uses aggression. Problem behavior can serve as a communicative function, which allows the student to receive something positive or get away from a downfall situation. If parents can take precautionary terms and handle every situation in a positive, calm manner, their child should not have many outbreaks.
The effects on family life can be very traumatic and difficult for parents to hear that their child has Autism. Imagine how unexpected it would be and the stress involved. Parents may be very upset, and others will be thankful for being able to have children at all. The everyday challenges are much different than they would be having a child without a disability. Autistic child may look like any other kid, but their actions will be completely different. Raising an Autistic child requires support and strong efforts from the entire family for the child to be successful.
First, a parent will experience shock. Since a parents child was most likely born without any problems or very minimal, they will not know how to handle this change. Second, they may experience being depressed if they could have done something different or standards they were going to hold for their kid. For example, a dad may be depressed at the fact of his son not being the star athlete and well-known stud of his school. Third, parents may become angry of their friends or family they know with a typical child. They may be moody or not themselves due to the circumstances going on in their life. Fourth, denial of Autism happening to your own child could happen when the doctor is trying to explain to you. Although this is a normal way of coping, parents have to be careful to still want to treat their child and make them better. Fifth, acceptance is key because if a parent automatically treats their child as different, they will regress and not become the person they could become. (“Autism Speaks”, 2009).
Each family member will go through these steps at different times and ways and it will take time to adjust to new step in a family’s life. I believe is essential for family members to be accepting and love on their child for every single thing they have to offer just the same as they would have. If the family can get the help they need and take advantage of the wonderful services provided, they will be much happier. Also, parents should be educated on Autism. This would be very beneficial to their child’s rights and everyday life. For brothers and sisters, they have to remember they’re not alone and to be proud, not angry. Anger only makes the situation worse and if it is really bad then the child should seek counseling. For extended family, they can help out by offering to watch the children, while the parents can have some one on time. The people with strong personalities should set the example of being accepting, genuine and courageous. (“Autism Speaks”, 2009).
The impairments of Autism will affect the person for the rest of their life. It is to be noted that especially in the teen years, an Autistic child may have aggressive behavior. This is due to embarrassment, not getting along with friends and family, etc. (“Bright Tots, 2004). Family bonding is crucial with having a child with any type of disability because a family can easily fall apart if everyone doesn’t work together to support the child. Research will continue for a long time to come on the issues of children receiving Autism after birth. Beyond everything, each child with exceptionalities deserves to live just like any other kid and be accepted in our world.
Works Cited
Autism Speaks. (2009). Retrieved September 30, 2009, from http://www.autismspeaks.org.
Bright Tots. (2004). Retrieved September 30, 2009, from http://www.brighttots.org.
Turnbull, A, Turnbull, R, & Wehmeyer, M.L. (2010). Understanding Students with Autism. In J.W. Johnston, A.C. Davis, and H.D. Fraser (Eds.) Exceptional Lives Special Education in Today’s Schools (pp. 302-330). New Jersey: Pearson Education, Inc.
Rachel Toner and Courtney Danze November 23, 2009 ED 226 Part 2 Through the inquiry of the interviews we have done these past few months, we have come to find a true understanding and compassion towards Autistic children and the people who influence their everyday lives. Students with autism and their families experience challenges in areas such as academics, marital relationships, and the stress of everyday life. They also struggle with social relationships, can experience other medical problems or demands, and are influenced and supported by the outside community. Through these areas, we have been able to gather evidence and learn about children with autism and those who are influential to their daily lives. Through understanding these students and their families, we have been able to gain an understanding of the impact a disability has upon a family. Throughout the conduction of our interviews, we have discovered that students with autism are affected in their academic performance on a daily basis. Not only is their academic ability disrupted, but the relationships these students have with their teachers differs from that of their peers. One respondent stated that, “teachers and professionals are very helpful and understanding” (CD/CB/Autism/11/19/09/5AM). This belief has been held by numerous families with children who have autism who are placed within public schools. As one teacher made it clear, “Families are grateful for their autistic child to be with the regular education population (CD/DW/Autism/9/28/09/1AC). For one student, the relationship she forms with her teachers is important to her overall success in school. “My teachers know about my Asperger’s. Sometimes if I get bad they will send me out of the room…” (RT/BG/Autism/11/19/09/4P), this has been previously established with her teachers in a manner that allows for her to experience the most success within the classroom. Referring to her grandson one participant informed us that her grandson, “he is in regular junior high classes, except for reading comprehension” (CD/CB/Autism/11/19/01/5Q). It is common that in today’s schools systems students with autism are being integrated into regular education classrooms but are still receiving extra help and attention in special education classes regarding subject areas in which they struggle or need extra help. One correspondent mentioned of her grandson, “He is in his regular classroom, he is pulled out 22 minutes a day for a particular subject” (RT/LG/Autism/11/19/09/5F). As for another participant in the discussion of her son she stated, “He goes to school four and a half hours a school day in a regular education classroom and three hours in a Special Education classroom” (RT/BB/Autism/9/28/09/1J). As some parents believe and one respondent expressed, “I think that mainstreaming is better, it is more beneficial than special education” (CD/MA/Autism/10/5/09/2DE). Other parents find special education beneficial for their children and “Parents typically want what is best for their child” (CD/DW/Autism/9/28/09/1U) as one teacher expressed in her interview. The communication that occurs among parents and the special education staff is vital to a student’s academic success within the classroom, whether it be a regular or special education class. “Parents are the best source of information” (CD/DW/Autism/9/28/09/1R) and “they know the child better than anyone,” (CD/DW/Autism/9/28/09/1S) therefore “it is vital that teachers truly listen to parents” (CD/DW/Autism/9/28/09/1V). The contact between the parents and a teacher can be achieved through many different means; one parent discussed how “we used to leave a daily notebook in our daughter’s backpack. Recently, I started it again to build communication so that I know what’s going on” (RT/SS/Autism/10/5/09/2W). In the view of a teacher a respondent commented, “I make regular phone calls home to relay information to the parents,” (CD/DW/Autism/9/28/09/1M) as means of staying connected with the student at home. “When parents share what their child is doing in the home setting, it sheds a new light on my view of the student” (CD/DW/Autism/9/28/09/1X). The constant communication that occurs between teachers, professionals, and the students are also important to the development of the students Individualized Education Plan (IEP). One parent expressed the benefits of a positive relationship, “since we had a great relationship with the Special Education professionals, the IEP meeting were very helpful. We were all on the same page with the same goals” (RT/SS/Autism/10/5/09/2T). Another respondent discussed her opinion that “IEP meetings should be an open, honest meeting,” (CD/DW/Autism/9/28/09/1P) in which “all participants can discuss the progress as well as the current needs of the student” (CD/DW/Autism/9/28/09/1Q). The importance of communication within the IEP meetings is also visible by another correspondent, “During the IEP, I think my school does a great job listening well to families. They are the ones living with the kids twenty four seven” (RT/BW/Autism/11/6/09/3N). This ability to communicate for the betterment of the student is a reoccurring idea that has been found throughout our inquiries. We have also found that not only is communication with the student and parents important, but the ability to communicate with other professionals and other teachers provides for the maximum support for students. Many of the parents we interviewed were also special education teachers or professionals, whom have knowledge of special education laws and procedures. One such respondent said, “Since I have taken special education law classes I understand the rights very well and know when the school does something wrong”(RT/BB/Autism/9/28/09/1U). The communication that occurs with such parents is important because they know the type of support and services their child is supposed to be receiving within the school system. Among teachers it is also important that communication occurs between faculty members, in order to fully benefit and provide for students with autism. “As a teacher, helping your staff learn what you’ve been taught and blessed with support from the parents, as well as the student is vital. It’s easier for people to have compassion this way” (RT/BW/Autism/11/16/09/3S). “We also work with the kindergarten teachers, for those students transitioning from the preschool, to see what our students need to work on” (CD/SR/Autism/11/19/09/4AF). Through the correspondence with other teachers, special education and regular education teachers are able to provide their students with the necessary support to reach their greatest level of academic success. Within the area of academics comes the ability to transition among grades and from a special education class to a regular education classroom. According to one teacher, “transitions are usually not a big deal, but if a child has a rough time with transitions, then we use a picture schedule to display and prepare these students” (CD/SR/Autism/11/10/09/4AL). The students are better prepared for the emergence into a regular education classroom through preparations made by the teacher, for example one special education teacher provides support, “for transitioning student we send home a work book during the summer” (CD/SR/Autism/11/19/09/4AH). “The work book includes social stories and worksheet that will provide for a smooth transition when school starts again” (CD/SR/Autism/11/19/09/4AI). This teacher also established a positive and communicative relationship with her students and their parents through “encouraging my parents to work with students throughout the summer so that they can be prepared for the transition” (CD/SR/Autism/11/19/09/4AJ), whether it be to a regular education classroom or a change in grade level. Overall students with autism must face challenges within the classroom and find ways, through communication, to receive the necessary support and services in order to become academically successful. The statistics for parents getting divorced that have children with disabilities is off the charts. We believe the main issue here is the lack in communication and agreement between the couple. The disagreement is usually based upon how to raise a child who is different than you would have expected. We must keep in mind all families will handle it in multiple ways. Both parents are going through most of the same emotions; they just need to be discussed. One correspondent stated, “It’s best to work as a unit; it is through working together that progress is made” (CD/MA/Autism/10-5-09/2CP). “It can affect the husband and wife because they can’t agree upon the help needed” (CD/MA/Autism/10-5-09/2CM). “It can end in divorce” (CD/MA/Autism/10-5-09/2CN). As we interviewed, we came to the conclusion it is easier said than done to give 100 percent every day and not give up. To love your child completely with patience is being the best parent you can be. “At times it would have been simpler to just walk away and quit, but especially with so many kids you can’t just walk away”(CD/MA/Autism/10-5-09/2CO). “I love my son, but sometimes I don’t like him, you need someone to be able to tell this to and have them understand”. (CD/MA/Autism/10-5-09/2CQ). In a situation where divorce came out the child being Autistic, one respondent declared about her x-husband, “The differences we had on how we should approach our child’s behavior were vast. For example, he would think something our child was trying to communicate with us was pain, and I would think he would be laughing or something else. The difference in opinions can drive a wedge in marriages of children with disabilities”. (RT/BB/Autism/9/28/09/1AB). “His father is now remarried and has not seen our child with Autism in five years now. So, yes, having a child with a disability can break up marriages and I have seen it happen several times. The risk is much higher for divorce and disagreement”. (RT/BB/Autism/9/28/09/1AD). What we took from this interview is to build up the relationship with your partner as strong as it can possibly be. We want to learn everything there ever is to know about them before having children. How could a couple be mature or ready to bring a human being in to this world, let alone one with special needs, if they aren’t financially and emotionally stable. This has made us think, if one of us had a child with disabilities, we would be completely accepting of them because of the positive outlook we have on it. It is so easy for parents to want an abortion or not know how to deal with a change of ideal plans they had in mind for their child. From a Faith perspective, religion can be what keeps your marriage strong. If God is at the center, all of your worries and concerns about how to handle a child with disabilities can be reduced. In conversation with the grandmother of a child with disabilities, she stated, “They are very devout Catholics that call upon the Lord in their times of struggles. They just do the very best they can”. (RT/LG/Autism/11/19/09/5AR). The same respondent stated in conversation, “Parents need to remember they fell in love once too and have to have some alone time”. (RT/LG/Autism/11/19/09/5BC). The parents of the child cannot leave the child with just anyone, so the grandparents will take him and his brother for one weekend every month. They sincerely love spending time with the children, thus giving the parents a break. “Families with autistic children have added daily stressors that many do not realize” (CD/DW/Autism/9/28/09/1A). The daily challenges of families with children with disabilities are often overlooked and not mentioned, it is through our inquiry of families that we have grown to better understand these daily factors that influence not only the child with the disability but influence their families and those around them. One respondent said “sometimes it can be exhausting, you are physically drained, mentally tired, and you must give repetitious reinforcement” (CD/MA/Autism/10/5/09/2EB). It is a never ending job, as parents the child must be receiving constant care and attention, this is often demanding as expressed by one parent in discussion of her son, “He has to have someone with him nearly all of the time”(RT/BB/Autism/9/28/09/1C). The constant strain of having a child with a disability however is not seen as a burden by a majority of parents, but rather a blessing. One mother stated of her son “He is not demanding, but we have limitations,” (CD/MA/Autism/10/5/09/2M) once again bringing to attention the stressors that affect these families on a daily basis, aspects we did not have a clear understanding of before. As one parent puts it, “I know someone with three autistic children….It’s a whole different world for that family” (RT/BW/Autism/11/16/09/3T). Truly it is a different world; there are certain things families have to take into consideration with having an autistic child. One such aspect is the child’s inclusion into the family, for most autistic students their lack of social skills makes it challenging for children to form relationships within the family. One participant said, “I believe the best treatment is being integrated within the family,” (CD/MA/Autism/10/5/09/2AO) and this view is shared by most parents. “My son has to have his alone time” (RT/LG/Autism/11/19/09/5L) and while it is important to provide to the needs of the child it is also ideal to enforce inclusion within the family. One mother makes the importance of inclusion within her home very clear through her statement, “We would not divorce him from the family,” (CD/MA/Autism/10/5/09/2AN) meaning he is always included and a part of their family. Families who are affected by autism must also take into consideration their child’s communication and social levels, and cater to the needs of their child. “For people with autism you cannot assume they understand and are able to fill in the gaps” (CD/MA/Autism/10/5/09/2AD) therefore, “you must be explicit with details” (CD/MA/Autism/10/5/09/2AE). One correspondent shared that “as parents, we are very literal with our son” (RT/BB/9/28/09/1AI) and this must be done for the best interest of their child. For another respondent she expressed her lifestyle of living with autism. “I live like an average person, I am high functioning. I have good friends and grades. It is just my emotion I have a really hard time controlling” (RT/BG/Autism/11/19/09/4F). “As for limitations within the family, he is unpredictable,” (CD/CB/Autism/11/19/09/5BS) one respondent commented in regards to the limitations children with autism place on their families. Another parent commented in regards to these limitations as well, “There really aren’t many things we can’t do as a family anymore. We still do typical activities, they just may not last as long of time” (RT/SS/Autism/10/5/09/2AK). The constant adaptations that parents must make to accommodate their children, was also expressed as an overall demanding factor of having a child with autism. For one respondent “it gets more difficult the older we get to balance out a schedule, but it keeps us going, it keeps us young”(CD/MA/Autism/10/5/09/2DD). The limitations placed within families is due primarily to the behavior displayed by students with autism, one respondent emphasized this belief with her comment, “He just has unpredictable social behavior, it a problem especially when they’re young” (CD/CB/Autism/11/19/09/5BX). The daily factors of life, also seem to have a big impact upon the life of children with autism and their families, it is often due to the ritualistic behaviors of these children that families experience difficulties and challenges within their daily lives. One participant displayed concern with her sons ritual of “almost always feeling comfortable wearing the color red” (RT/LG/Autism/11/19/09/5C) and the adaptations she has made to benefit her son. A majority of parents and family members addressed the concern of food as an issue within the home. “For dinner, he is very picky. If his mother makes his spaghetti with sauce, he takes each individual piece and dips it in a separate bowl of sauce” (RT/LG/Autism/11/19/09/5R), accommodations always have to be made. Another parent discussed the limitations her sons eating patterns had on their family, “This affects our family because we can never go out to eat. If we do, we have to bring food for our autistic son” (RT/BB/Autism/9/28/09/1AO). Still, other families discussed issues with food, a respondents grandson “went through a month with only wanting to eat French fries” (CD/CB/Autism/11/19/095K) and another mother talked over her son, “He has rituals and things he does, he doesn’t eat sandwiches, or he won’t eat hamburgers with a bun” (CD/MA/Autism/10/5/09/2AT). Due to such restrictions and limitations within these individual’s diets their families are impacted and forced to meet the needs of their child. Through our interviews we have been able to discover such issues and gain a respect and understanding for not only the child with autism but the parents, families, and teachers that work with these students on a daily basis and are affected by these factors. Come to find out, the community can either be very supportive or very judgmental. The way that society portrays a child with disabilities is sickening in the sense of looking down upon them because they don’t fit the “normal” stereotype. On the other hand, there are excellent support and advocacy groups that invest a lot of time in to helping families of children with disabilities. One participant responded, “We are very active in ARC (Association of Retarded Citizens). This group puts on dances and parties” (CD/MA/Autism/10/5/09/2CS/DB). We can see how support groups within your district would be very humbling knowing people in close proximity of you are going through the same type of struggles. “Our district provides a parent support group for Autistic and other special needs families” (CD/DW/Autism/9/28/09/1AF). One participant responded, “We had a fundraiser a few weeks ago to raise money for the school and it was a Barbeque. We took the kids there for lunch, so they actually got to be a part of the fundraiser”. (CD/TB/Autism/11/17/09/3AJ). It is examples such as this that show true interaction and submerging the children in to community life. As for the negatives, a mother of a child with Autism said in conversation, “The worst is cruel little kids” (CD/MA/Autism/10/5/09/2CY). Another participant said, “We need to accept them for who they are, no matter what the situation is” (RT/LG/Autism/11/19/09/5AF). “There are always strangers that will look at my grandson differently and be disgusted at him”. (RT/LG/Autism/11/19/09/5AX). “People blame his actions on Autism. But, he is a normal human being” (RT/LG/Autism/11/19/09/5U). What the community doesn’t realize is how badly the child wants to be accepted, but they can’t communicate that. It hurts the parents and people who care for the child so deeply when others look at them as if they are an alien or object. Setting goals and attaining them is vital in taking steps towards success of a child with or without disabilities. “All of our students have unity goals, which are based upon the individual” (CD/TB/Autism/11/17/09/3AL).“Unity goals allow for the family to be involved and set goals for where they want their child to achieve (one student was to stay quiet in church). So, it also affects within the community as well” (CD/TB/Autism/11/17/09/3AM). “We truly encourage people to come in and sit and watch our session” (CB/TB/Autism/11/17/09/3AP). “There are some great families out there that are so strongly involved in the support groups for their child. We need more people to be light like them” (RT/BW/Autism/11/16/09/3Z). One of the main things Autistic children struggle with is the deficit of social skills. Social skills come very hard for them. If teachers and family members work with the child daily, it will lead to self-confidence and increase in being socially aware. In conversation with a participant, they stated, “It is extremely difficult to teach teenage social skills” (CD/DW/Autism/9/28/09/1F).“Typical social skills for most may take years for an Autistic student to master” (CD/DW/Autism/9/28/09/1G). “He wants to talk with people and likes to talk about information he is comfortable with (president, weddings, gossip…etc) (CD/MA/Autism/10/5/09/2J). A grandmother of a child with Autism declared, “My grandson went home crying and he laid down on the grass and said, “I know I’m different, but they were mean to me, they don’t have to be mean to me” (CD/CB/Autism/11/19/09/5BB). “My personal thought is that we have gained more from him than he has burdened us” (CD/MA/Autism/10/5/09/2Q). “The best way to explain to my child was, ‘You do not communicate well with people’, this was the most simplistic way for him to understand”(CD/MA/Autism/10/5/09). As for another respondent, “Emotions like love, sadness, anger are too abstract” (CD/MA/Autism/10/5/09/2AG). “He likes to go into his room alone, but you know that everyone does that, so how is that so// different from any “normal” person?” (CD/MA/Autism/10/5/09/2AS). “The first time he meets someone he tries to give them a hug. I think it’s because he gets nervous and doesn’t know what to do” (CD/MA/Autism/10/5/09/2BG). “Our younger son would tell people that our son with Autism was in a terrible car accident. This was his way of getting off the hook about him” (CD/MA/Autism/10/5/09/2BU). “It made it easier for our youngest son to create a disability in his own mind and after that no one bothered him about his brother (CD/MA/Autism/10/5/09/2BV). “His brothers and sisters get excited for our son. He is truly a special addition to our family” (CD/MA/Autism/10/5/09/2DP). “I really truly believe that our son with Autism has made us a really close family; our kids are always here if we need something” (CD/MA/Autism/10/5/09/2EF). “Both parents went through a divorce and are remarried, but the child with Autism didn’t’ seem to suffer because he leaned on his older brother” (CD/CB/Autism/11/19/09/5AU). “Our child with Autism is very scared of loud noises, especially thunder. One night it was thundering and lightening, and my daughter-in-law walked in to his room to check on him. She found the younger son crawled in to bed with his hands put over the child with Autism’s ears” (RT/LG/Autism/11/19/09/5AL). Family life is what builds the person’s character and molds them in to the person they will become. Families can learn so much by just having a child that may be different, but is hopefully respected and loved within the home. In the long run, we strongly believe it builds the children to be advocates and accepting of people who are not like them. Finally, communication can be a huge block put up between someone with a disability and someone without. Whether it is the child with Autism not knowing how to communicate or the recipient not caring to listen, it’s a common issue. “At first they thought he was deaf because they talked to him and he never responded” (CD/MA/Autism/10/5/09/2CG). “Since my son does not have the ability to communicate with talking, he is very limited to social opportunities” (RT/BB/Autism/9/28/09/1AG). “But, in school he interacts just fine, especially in gym class. When he is paired up with kids who get to know him, he will follow them around and they will communicate through actions. He will never talk, but is takes familiarity for him to be comfortable around people” (RT/BB/Autism/9/28/09/1AH). “My son has poor telephone communication and with people in general” (RT/BB/Autism/9/28/09/1B). “We use signing with him, but a special kind called CASE” (RT/BB/Autism/9/28/09/10). “Socially, we see her normal functioning classmates at Hy-Vee and they will always say hello. They’re very receptive to my daughter” (RT/SS/Autism/10/5/09/2AI). “In the case of a high functioning child that does well academically, it’s harder for people to understand their inability to communicate well-relationships. They choose to isolate themselves sometimes” (RT/BW/Autism/11/16/09/3R). We believe it’s easy for outside people to be confused on how to communicate in the proper way with children of Autism and catering to their needs. Poor telephone skills seemed to be a recurring thought for most of the people we interviewed as well. In conversation with a teenager with Asperger’s disease, they said, “Sometimes I’ll get so mad I will yell at people for no reason. I want to let my anger out on something else but can’t” (RT/BG/Autism/11/19/09/4D). “I’ve been in fights with my extended family” (RT/BG/Autism/11/19/09/4S). “I told my parents I couldn’t go to any of the holidays because I didn’t want to risk not being able to control myself” (RT/BG/Autism/11/19/09/4U). “I apologized and they completely understood. All of my family knew I wanted to come, but couldn’t” (RT/BG/Autism/11/19/09/4V). Having control over our actions is something cognitively normal human beings take for granted. A lot of times children simply have no control and act out in hurtful or extreme ways to try and communicate what they are feeling inside. Where no direct treatments have been found to cure autism, there is the use of therapy that provides many benefits for students. In speaking to an applied behavior analysis (ABA) therapist she explained this therapy treatment, “ABA therapy uses operant conditioning to change the behaviors of students with autism”(CD/TB/Autism/11/17/09/3A). “With ABA the students are always working for reinforcements” (CD/SR/Autism/11/19/09/4P). Through the use of ABA therapy students go through “role play that helps with behaviors which limit the family,” (CD/TB/Autism/11/17/09/3N) and “works on daily routines or scenarios such as not running on the pool deck at the country club or with issues such as bed time routine and potty training”(CD/TB/Autism/11/17/09/3M). Families, through ABA therapy, are able to gain help in the aspects of their daily life that provide difficulties for their families, the therapy allows for autistic students to become better adjusted and adapted to the everyday life of their family. Therapy can also help students within their social skills, in speaking to an ABA therapist at an autism school she commented, “We also work with students on their ability to imitate their peers, they are asked to imitate verbal and nonverbal actions” (CD/TB/Autism/11/17/09/3AF). “We call this observational learning, where we make sure the autistic student is learning from their peers…”(CD/TB/Autism/11/17/09/3AG). Improvement in social areas is important especially for autistic students because it allows them to make connections with those around them. Overall therapy has been found to be useful within the classroom and home, through the use of ABA therapy students are able to improve in daily skills and learn to interact more efficiently with their peers. Throughout our inquiry of families who are affected by disability, specifically autism, we have gained an appreciation and understanding not only for the student but for their families and those who influence their lives on a daily basis. We were able to gain insight into the everyday lives of such families, and learn of the daily challenges and struggles they face. Through the interviewing process we were able to personally connect and communicate with families, who shared personal information and stories as a means of providing us with a greater understanding of their lives. With this gained insight, we were able to gain compassion and learn the best means to interact with students with autism. This opportunity has been one that has provided much enjoyment for both of us and ultimately will be beneficial to us future educators.
Courtney Danze
Benedictine CollegeAutism is a disorder that occurs in children, usually before the age of three, which affects the development of the child’s verbal and nonverbal communication, social interaction, and academic performance (A. Turnbull, R. Turnbull & Wehmeyer, 2010, p. 302). Most children with autism develop normally in appearance, but it is through their behaviors they differ from typical children. These behaviors include the children’s engagement in repetitive activities and stereotyped movements, resistance to changes within the environment and daily routine, and the display of unusual responses to sensory experiences (Turnbull, et al., 2010, p. 302). As the number of children diagnosed with autism has increased it has become important to gain an understanding for the typical behaviors and characteristics of these students, in an attempt to provide them with the educational resources and services needed to become high functioning within their academic performance.
Autism is often used as the general term to describe the group of developmental disorders that occur within the brain. These disorders are known as Pervasive Developmental Disorders (PDD) or otherwise known as the Autism spectrum (“What is Autism”, 2009). The Autism spectrum, made up of five conditions that have their onset in early childhood, ranges on scale from mild to severe delays in development. These five early onset conditions include autistic disorder, Rett’s disorder, childhood disintegrative disorder, Asperger’s disorder, and pervasive developmental disorder not otherwise specified (Turnbull, et al., 2010, p.203). Pervasive Developmental Disorders are referred to as such because of the development during early childhood and the variety of areas that are developmentally affected (“Pervasive Developmental Disorder”, 2004). Although these disorders are pervasive, they do not necessarily affect all aspects of the child’s development. For example, in some less severe cases of autism a child may develop normal speech but have problems in areas such as social interactions and behavior (“What is Autism”, 2008). It is important to keep in mind that PDD is not one disorder, but rather a category under which a wide variety of developmental delays are placed. Autism is the most severe pervasive development disorder, primarily due to the disturbance in an individual’s ability to relate to others and a delay in language and cognitive development (“Pervasive Developmental Disorder”, 2004).
Autism has continued to increase in the number of diagnosis worldwide, according to a recent study conducted by the Centers for Disease Control and Prevention the incidence of being diagnosed with an autism spectrum disorder is ten times more likely than it was ten years ago. In today’s society one out of every one hundred and fifty students are considered to have some form of autism, and many experts believe that the number may continue to rise (“Autism Rates”, 2004). As the appearance of autism becomes more common, it is often considered that either the disorder has rapidly increased in the number of children affected, environmental influences, or the disorder has become more easily identifiable. There are no established explanations for such an increase, but some studies suggest that boys are more likely than girls to develop autism and receive the diagnosis three to four times more frequently. Within the United States alone, one out of ninety four boys is diagnosed with autism (“What is Autism”, 2009).
Autism, however still remains one of the greatest mysteries of medicine. More than 25,000 United States children were diagnosed in 2008, which is more than the diagnosis of new pediatric cased of AIDS, diabetes and cancer combined, but scientist and doctors still know very little about the neurological disorder. There is no means of detecting autism through test or brain scans; diagnosis of the disorder relies solely on behavioral observations and screening (“Autism Rates”, 2004). The increases in the frequency of autism over recent years have increased the concern over the possibility of the disorder being linked to environmental causes; however the exact cause of autism is still in question today.
In today’s society the cause of autism is in great debate. Many believe that the increase in diagnosed cases is a result of greater awareness to the condition, or attributed to an increase in screenings, better recognition, increased diagnosis from doctors, and the schools apprehension in treatment. Whereas, others believe the prevalence could be caused by genetics or environmental factors such as pollution, food additives, or even childhood vaccinations may play a role. With the widely spreading concern that vaccinations made with Mercury, which contain preservative thimersal, are behind the epidemic of autism, it has never been directly linked. In recent studies the thimersal in childhood vaccines could contribute to or cause neurological disorders, such as autism and other pervasive developmental disorders. The basis for this claim was a study in which a mercury compound was introduced into the blood stream of young children. The study resulted in the observation of a possible underdevelopment in the immune and neurological systems of these children. The Institute of Medicine however has found no “casual relationship” between autism and childhood vaccines, the connections have not been proven (“Autism is on the Rise”, 2004).
On the other hand, autism has been linked in small number of cases to genetic disorders such as Fragile X, Tuberous Sclerosis, and Angelman’s Syndrome. Such environmental agents, infectious and chemical, exposed during pregnancy have also been linked to an increase in autism. Evidence has also suggested that autism may involve inflammation within the central nervous system, and studies have illustrated that the immune system can influence behaviors related to autism (“What is Autism”, 2009). However, the definitive cause of autism remains unclear and can only be based upon the observations of the child and their surrounding environment.
As autism is a developmental disorder, it typically affects a child before the age of three and can interfere with the development of communication, social interaction, and learning approaches (Turnbull, et al., 2010, p. 302). As the onset of this disorder occurs within early childhood it is important to have awareness and the ability to recognize the early warning signs of autism. Such characteristics which might be displayed by a child in early childhood are the inconsistent reaction to sounds, such as not responding to their own name being called. Others include failure to imitate simple movements like waving, a delay in the development of spoken language, and failure to act in a reciprocal manner by showing only an interest in themselves, which also includes the display of not being interested in interacting with other children (Stone, 2004).
As mentioned early there are a number of disorders that fall within the autism spectrum, these include autistic disorder, Rett’s disorder, childhood disintegrative disorder, Asperger’s disorder, and pervasive developmental disorder not otherwise specified(Turnbull, et al., 2010, p.203). With autistic disorder being the most severe and common of the pervasive developmental disorder, it pertains mainly to the development of disturbances in interactions with others and delays in language and cognitive skills (“Pervasive Developmental Disorder”, 2004). As for Rett’s disorder which becomes evident within the second year of life, it is the most physically disabling disorder within the autism family. Rett’s Syndrome destroys the development of speech and normal movements, creating cognitive impairments and problems with socialization for the diagnosed child. Children affected by this form of autism experience regression in the development of expressive language and hand use (“Rett Syndrome”, 2004).
Covered within the autism spectrum is childhood disintegrative disorder, which displays itself in development at three of four years of age and the child has experienced normal development up to the point of onset. The child will begin to show regression in academic, social, and language functioning which declines form their previous behavior in these areas. Childhood disintegrative disorder is also commonly associated with severe cognitive impairments and must contain the features of autistic disorder in at least two of the following areas: inability to interact socially, incapable of communicating needs, prefers solitary play, restricted repetitive and stereotyped features in behavior. A loss of skills must also occur within two of the following areas: expressive or receptive language, social skills and/or flexible behavior, bowel or bladder control, play, or motor skills (“Childhood Disintegrative Disorder”, 2004).
Asperger’s Syndrome is also classified as a Pervasive Developmental Disorder because it deals with the development of the personality and is similar in the abnormalities of early childhood autism. Most children whom become diagnosed with Aspergers are awkward within social situations, with the inability to make eye contact with others, and display abnormal behaviors. Characteristics include the lack of facial and emotional expression and the practicing of routines and rituals, some children express the need to follow a certain order of events (“Asperger’s Syndrome”, 2004). The last disorder on the spectrum is Pervasive Developmental Disorder not otherwise specified a condition in which the child exhibits impairments in the development of reciprocal social interactions. These interactions involve verbal and nonverbal communication, and most often autistic tendencies are present. These children also partake in self injurious behavior as a form of self stimulation, and also seek repetitive and ritualistic behaviors as a means of sensory stimulation (“Pervasive Developmental Disorder”, 2004).
Although there are a number of disorders set among the Autism Spectrum, autism can most often be characterized by distinctions and differences within development of communication, social interactions, behavioral traits, and learning approaches. First within the development of communication, children with autism can range in variety from non verbal communication to an extensive use of language (Turnbull, et al., 2010, p. 302). The communication of children will vary in the use of unusual gestures, inability to make eye contact with others, and difficulty in expressing non verbal communication (“Characteristics of Autism”, 2004). Additional characteristics include the ability to focus attention on one topic only and the demonstration of repeating or echoing other people’s language, which is known as echolalia (Turnbull, et al., 2010, p. 303).
Autism is also largely characterized by a child’s delay in social interactions and social skills. According to the American Psychiatric Research Council, four criteria are in existence for diagnosing social development in individuals with autism. These criteria are as follows: the impaired use of nonverbal behavior, a lack of peer relationships, failure to spontaneously share enjoyment, interest, and achievements with others, and the lack of reciprocity. Children with autism most often posses the theory of mind, meaning they are unable to comprehend that their thoughts differ from others and therefore it creates a difficulty in developing relationships with their peers (Turnbull, et al., 2010, p. 303-304). Children demonstrate these difficulties in a number of visible ways. They can display the tendency to play with toys in an unusual or stereotypical ways as well as engaging in inappropriate laughing or giggling. Most often if play does occur it lacks imaginative qualities of social play and children do not interact with the children they are surrounded by or withdraw themselves entirely from social situations (“Characteristics of Autism”, 2004).
Other distinctive characteristics commonly associated with autism is the display of unusual behavioral traits, these behaviors include repetitive and stereotypical behaviors as well as problem behaviors. Behavior differences are classified by the display of restricted interest or the obsession with one interest or object. The child may also partake in unreasonable routines or stereotypical and repetitive behaviors of motor mannerism. Such behavior includes hand flapping, finger flicking, and rocking. Children with autism may also display a fascination with movement and a resistance to change (“Characteristics of Autism”, 2004). Problem behavior is another characteristic of such unusual behavior. The disorder may cause the child to participate in self-injurious behavior and aggression. Self-injurious behavior includes head banging, biting, and scratching, whereas aggression involves these same behaviors but is rather direct towards others (Turnbull, et al., 2010, p. 305). These behaviors may not only be visible characteristics of autism, which help in the classification of the disorder, but could be caused by a number of outside forces. For example behavior of the child may be a direct result of hypersensitivity or hyposensitivity to sensory stimulation, difficulties in understanding social situations, or the result of change or anxiety (“Characteristics of Autism”, 2004).
Lastly autism is characterized by the differences the diagnosed children display in their intellectual functioning, or differences in learning style. These children differ from normally developing individuals, and range in ability from gifted to mental retardation. Out of all the children diagnosed with autism disorders, approximately 64 to 70 percent of children and youth have an intellectual disability (Turnbull, et al., 2010, p. 306). Children with autism experience defects in their cognitive functioning which cause them to experience difficulties in paying attention to appropriate signals or information, difficulties with receptive and expressive language, defects in social cognition meaning they lack the ability to share their attention and emotions with others. Other characteristics include the inability to plan, organize and solve problems (“Characteristics of Autism”, 2004).
With the inclusion of a number of disorders in the Autism Spectrum, it is easily understood why so many different characteristics are associated with autism. Autism is mainly characterized through the developmental delays in the area of communication, social interactions, a display of unusual behaviors, and differences in leaning approaches. Although these characteristics are most commonly associated with the disorder, not all of the characteristics apply to every individual. Each individual is unique, depending upon the type of pervasive developmental disorder they are diagnosed with. Students can be classified into five specific disorders as follows: autistic disorder, Rett’s disorder, childhood disintegrative disorder, Asperger’s disorder, and pervasive developmental disorder not otherwise specified (Turnbull, et al., 2010, p. 302).
It is important to know these disorders among the Autism spectrum and know the common characteristics of autism in an attempt to better understand students’ diagnosed with such disorders. With understanding the characteristics of students with autism comes the understanding of the necessary services and adaptations that need to be provided within the classroom in order to help these students receive the best education possible based upon their ability.
Works Cited
Asperger’s Syndrome. Bright Tots. (2004). Retrieved September 30, 2009, from http://www.brighttots.com/Aspergers.html
Characteristics of Autism. Bright Tots. (2004). Retrieved September 28, 2009, from http://www.brighttots.com/Autism/Characteristics_of_autism.html
Childhood Disintegrative Disorder. Bright Tots. (2004). Retrieved September 30, 2009, from http://www.brighttots.com/Childhood_Disintegrative_Disorder.html
Pervasive Development Disorder-PDD. Bright Tots. (2004). Retrieved September 30, 2009, from http://www.brighttots.com/pdd_Pervasive_Development_Disorder.html
Rett Syndrome. Bright Tots. (2004). Retrieved September 30, 2009, from http://www.brighttots.com/Rett_Syndrome.html
Stone, W. (2004). Can you recognize the early signs of autism? Bright Tots. Retrieved September 30, 2009, from http://www.brighttots.com/Early_signs.html
Turnbull, A., Turnbull, R. & Wehmeyer, M. L. (2010). Understanding Students with Autism. In J. W. Johnston, A. C. Davis, & H. D. Fraser (Eds.), Exceptional Lives Special Education in Today’s Schools (pp. 302-330). New Jersey: Pearson Education Inc.
What is Autism? (2009). Autism Speaks. Retrieved September 28, 2009, from http://www.autismspeaks.org/whatisit/index.php
What is Autism? (2008). Retrieved September 28, 2009, from http://www.autism.com/autism/index/html
Running Head: AUTISM CHARACTERISTICS
Characteristics of Autism
Rachel Toner
Benedictine College
Autism is a fascinating disability, very different from all other disabilities. It begins in Early Childhood and is a mental condition that is characterized by great trouble in communicating and developing relationships with other people. Children tend to struggle with using language and abstract concepts. If a child is to obtain Autism, it would more than likely be before the age of 3. (A. Turnbull, R. Turnbull, M.L. Wehmeyer, 2010, p. 302).
Some changes a parent may start to notice within their child could include delayed development, failure to act in a reciprocal manner and lack of interest in other children. For example, a child could have a vocabulary of less than fifty words or a child would only want to play with itself and not feel comfortable around other children. (“Bright Tots”, 2004).
Red flags of an Autistic child are incidents that any parent needs to look for in their child. If the child doesn’t have babbling by 12 months or any age, this is an indicator. Finally, having no back and forth sharing of interest in children, smiles, gestures, etc by six months or after. (“Autism Speaks”, 2009).
Autism is a severe form of a broader group of disorders referred to as pervasive developmental disorders. According to the American Psychiatric Association, there are five different conditions in being Autistic. Autistic Disorder, Rett’s disorder, childhood disintegrative disorder, Asperger’s disorder, and pervasive developmental disorder not otherwise specified. These can also be known as autism spectrum disorder. (Turnbull, et al. 2010, p. 302). This spectrum will be touched on throughout this paper.
Causes of Autism are a passionate topic that many parents disagree upon, often times causing divorce due to differences in opinions. There are most likely underlying reasons and immediate triggers. People with Autism can often times rely on ritual and structure. Most children with Autism can find their own ways of structure, but the world is puzzling. Therefore, a child could develop a learning disability if they are not taught correctly. This is an ongoing circle of the world becoming confusing and overwhelming.
Individuals with Autism can form built up frustration, anxiety etc. from not being understood and not understanding their surrounding world. A child will have to challenge their Autistic behavior if their parents are too busy working or cannot provide them with the resources their child needs to help them through.
Interventions have two major points of challenging behavior. First, recognizing difficulties specific to individuals that trigger their problems. Stated before was the world factoring in to an Autistic child’s life and the relationship a child can form. Secondly, a child may have difficulty in processing what certain conversations mean.
There are four areas for support of those with Autism to overcome any difficulties they may have, including Educational, Behavioral, Drug and other inventions. None of which are impossible to fix and they can all be effective when learning new skills or abilities. (“Bright Tots” 2004).
As for the “vaccine theory”, The CDC estimates 1 in 166 children have Autism (4 to 1, males over females) and 1 in 6 have some form of neurological developmental delay. According to Bright Tots, the reason for the high statistics is children were receiving extraneous amounts of the safe dose of mercury in their vaccine shots. Also, some children were more at risk due to poor immune systems and children not being able to get rid of the mercury.
Sadly enough, the mercury was removed from the vaccines, but Autism rates continue to increase. The MMR vaccination is another one that parents claim their child was “normal” until they received it. The link is usually due to the time frame of the child getting the vaccine, and when the signs of Autism start to arise. Still today, there is no proof that vaccines are possible causes of Autism. There have been many lawsuits and major disagreements about this unfortunate topic. Several credible scientists, government agencies and the medical community have stated there is no connection between autism and mercury once used to preserve vaccines.
The Centers for Disease Control says, "There is no convincing scientific evidence of harm caused by the low doses of thimerosal in vaccines, except for minor reactions like redness and swelling at the injection site". (“Bright Tots”, 2004).
The diagnosis is not done based on medical tests, but rather other behavior you see differently per say in a parents’ child. If a parent is concerned about their child, they should have them screened immediately. The parents need to take a look at the milestones where their child should be standing, and if their child is not meeting them, take the child in to the physician. (“Autism Speaks”, 2009).
Unfortunately, sometimes physicians do not believe parents, so the parents need to be very educated about where their child should be at for their particular age group. The MCHAT is a list of simple questions about your child and the answers determine whether or not they should be referred to a specialist. (“Autism Speaks”, 2009).
As I touched on before, there are five disorders on the Autism spectrum. Autistic Disorder and Pervasive Developmental Disorder are the same, just different ways of describing Autism. Development means the problem is found early in the child’s life and pervasive describes the areas affected. There is a greater amount of children with Autism Spectrum Disorder than there are with Autism. Pervasive is when a child has a delay in social, language, motor, and/or cognitive development. Some children will hurt themselves to gain attention to escape from the world. Early intervention is very crucial in gaining communicative and cognitive skills. “ABA”, “Floor time”, and “Social Stories” are all helpful in doing so. Autism is the most severe of the disorders.
Rett’s disorder is a complex neurological disorder classified as a pervasive developmental disorder and many argue is it is a possible misclassification. This disorder will usually not come out until the child’s second year. A classic sign of Rett’s disorder is repetitive handwriting and their head growing slower than body. Symptoms are usually cognitive impairment, seizures, sleep apnea, etc. Girls are very prone to gastrointestinal disorders. 80% have seizures and 50% no speech. Rett’s syndrome is very rare, affecting 1 in 10,000 girls. There is no cure, but through medication and therapy, there can be help formed. (“Bright Tots”, 2004).
Childhood disintegrative disorder starts at a bit older of an age group, 3 or 4 years old. Slowly the child moves backwards in progress in language, academics and socially. It also goes along with severe cognitive impairment. Behavioral features and loss of skills will occur in multiple areas that can be compared with an everyday child. Some signs will be delays in developmental motor skills and significant loss of skills they have already achieved. They will have very little social interactions, looking in multiple awkward ways. Some causes are mainly unknown, but there has been link to neurological abnormality. It has been linked to other conditions. Treatment can be done through behavior therapy and medication. (“Bright Tots”, 2004).
Asperger’s syndrome describes individuals who have significant challenges in social functioning but do not have significant delays in language development or intellectual functioning. (Turnbull, et al. 2010, p. 302). Typically, a child would lack facial and emotional expressions, except for strong emotion. Vocally, they are repetitive and dull. For example, they may say the same story repetitively. The child would be very insistent on routine, become attached easily and are quite uncomfortable in new places. They will have odd forms of self-stimulation early on as well. Asperger’s is one of the high functioning forms of Autism and is possibly hereditary. (“Bright Tots”, 2004).
Early childhood intervention is a support system for children with disabilities or delays and their families. The point is to provide appropriate therapies for children with disabilities and help them to succeed to their full potentials. This process is important for launching children in to IDEA’s four outcomes, which are Zero reject, Nondiscriminatory evaluation, Appropriate education, and Least restrictive environment.
Social stories are useful for preschool and older children with Autism because they learn how to interact socially. These stories are written by educators, parents or students and describe appropriate responses to social cues and other such cues. Circumstances such as understanding people’s actions, what is cool and un cool, manners, etc. need to be taught otherwise the student will be missing out on a crucial part of life, communication. If directive, descriptive, perspective and control sentences are used, those with Autism can really improve their communication and outbreak skills. Take for example, a boy who is 5 years old. After using social stories, he decreased the number of tantrums at home. These social stories improve young children with Asperger syndrome and Autism. (Turnbull, et al. 2010, p. 20, 318, 319).
Characteristics are difficult to pick out physically of children with Autism, but developmentally and internally they are much different than an average child. The four major categories include Communication skills, Social interaction characteristics, unusual behavior traits and Learning approaches.
Communication has a large range of differences among individuals. Some Autistic children are non-verbal or some are overly verbal. Some difficulties they will encounter would be unusual use of gestures, lack of eye contact, awkward body positions, unusual pitch or tone of voice, repeatedly talks about one topic and can’t switch topics, or interrupting at an inappropriate time. Almost all Autistic children have difficulty in comprehending verbal information.
Socially, an Autistic child will have difficulty with forming relationships, not because they don’t want to, but because they have difficulty understanding what it is like to be socially “normal”. (“Bright Tots”, 2004).
Unusual behaviors would be repetitive behavior, involving repeated movements and verbalizations. For example, hand flapping, persistent attention to parts of objects and strict adherence to routines. The student would use their repetitive behaviors to show they are bored. Sadly, these behaviors are distracting to themselves and other people. Predictability and structure provide their security. Disruptions are not good for an Autistic child’s environment and they will become very unhappy.
Behaviors can be problematic when a child is self-injurious and uses aggression. Problem behavior can serve as a communicative function, which allows the student to receive something positive or get away from a downfall situation. If parents can take precautionary terms and handle every situation in a positive, calm manner, their child should not have many outbreaks.
The effects on family life can be very traumatic and difficult for parents to hear that their child has Autism. Imagine how unexpected it would be and the stress involved. Parents may be very upset, and others will be thankful for being able to have children at all. The everyday challenges are much different than they would be having a child without a disability. Autistic child may look like any other kid, but their actions will be completely different. Raising an Autistic child requires support and strong efforts from the entire family for the child to be successful.
First, a parent will experience shock. Since a parents child was most likely born without any problems or very minimal, they will not know how to handle this change. Second, they may experience being depressed if they could have done something different or standards they were going to hold for their kid. For example, a dad may be depressed at the fact of his son not being the star athlete and well-known stud of his school. Third, parents may become angry of their friends or family they know with a typical child. They may be moody or not themselves due to the circumstances going on in their life. Fourth, denial of Autism happening to your own child could happen when the doctor is trying to explain to you. Although this is a normal way of coping, parents have to be careful to still want to treat their child and make them better. Fifth, acceptance is key because if a parent automatically treats their child as different, they will regress and not become the person they could become. (“Autism Speaks”, 2009).
Each family member will go through these steps at different times and ways and it will take time to adjust to new step in a family’s life. I believe is essential for family members to be accepting and love on their child for every single thing they have to offer just the same as they would have. If the family can get the help they need and take advantage of the wonderful services provided, they will be much happier. Also, parents should be educated on Autism. This would be very beneficial to their child’s rights and everyday life. For brothers and sisters, they have to remember they’re not alone and to be proud, not angry. Anger only makes the situation worse and if it is really bad then the child should seek counseling. For extended family, they can help out by offering to watch the children, while the parents can have some one on time. The people with strong personalities should set the example of being accepting, genuine and courageous. (“Autism Speaks”, 2009).
The impairments of Autism will affect the person for the rest of their life. It is to be noted that especially in the teen years, an Autistic child may have aggressive behavior. This is due to embarrassment, not getting along with friends and family, etc. (“Bright Tots, 2004). Family bonding is crucial with having a child with any type of disability because a family can easily fall apart if everyone doesn’t work together to support the child. Research will continue for a long time to come on the issues of children receiving Autism after birth. Beyond everything, each child with exceptionalities deserves to live just like any other kid and be accepted in our world.
Works Cited
Autism Speaks. (2009). Retrieved September 30, 2009, from
http://www.autismspeaks.org.
Bright Tots. (2004). Retrieved September 30, 2009, from
http://www.brighttots.org.
Turnbull, A, Turnbull, R, & Wehmeyer, M.L. (2010). Understanding Students with Autism. In J.W. Johnston, A.C. Davis, and H.D. Fraser (Eds.) Exceptional Lives Special Education in Today’s Schools (pp. 302-330). New Jersey: Pearson Education, Inc.
Rachel Toner and Courtney Danze
November 23, 2009
ED 226
Part 2
Through the inquiry of the interviews we have done these past few months, we have come to find a true understanding and compassion towards Autistic children and the people who influence their everyday lives. Students with autism and their families experience challenges in areas such as academics, marital relationships, and the stress of everyday life. They also struggle with social relationships, can experience other medical problems or demands, and are influenced and supported by the outside community. Through these areas, we have been able to gather evidence and learn about children with autism and those who are influential to their daily lives. Through understanding these students and their families, we have been able to gain an understanding of the impact a disability has upon a family.
Throughout the conduction of our interviews, we have discovered that students with autism are affected in their academic performance on a daily basis. Not only is their academic ability disrupted, but the relationships these students have with their teachers differs from that of their peers. One respondent stated that, “teachers and professionals are very helpful and understanding” (CD/CB/Autism/11/19/09/5AM). This belief has been held by numerous families with children who have autism who are placed within public schools. As one teacher made it clear, “Families are grateful for their autistic child to be with the regular education population (CD/DW/Autism/9/28/09/1AC). For one student, the relationship she forms with her teachers is important to her overall success in school. “My teachers know about my Asperger’s. Sometimes if I get bad they will send me out of the room…” (RT/BG/Autism/11/19/09/4P), this has been previously established with her teachers in a manner that allows for her to experience the most success within the classroom. Referring to her grandson one participant informed us that her grandson, “he is in regular junior high classes, except for reading comprehension” (CD/CB/Autism/11/19/01/5Q). It is common that in today’s schools systems students with autism are being integrated into regular education classrooms but are still receiving extra help and attention in special education classes regarding subject areas in which they struggle or need extra help. One correspondent mentioned of her grandson, “He is in his regular classroom, he is pulled out 22 minutes a day for a particular subject” (RT/LG/Autism/11/19/09/5F). As for another participant in the discussion of her son she stated, “He goes to school four and a half hours a school day in a regular education classroom and three hours in a Special Education classroom” (RT/BB/Autism/9/28/09/1J). As some parents believe and one respondent expressed, “I think that mainstreaming is better, it is more beneficial than special education” (CD/MA/Autism/10/5/09/2DE). Other parents find special education beneficial for their children and “Parents typically want what is best for their child” (CD/DW/Autism/9/28/09/1U) as one teacher expressed in her interview.
The communication that occurs among parents and the special education staff is vital to a student’s academic success within the classroom, whether it be a regular or special education class. “Parents are the best source of information” (CD/DW/Autism/9/28/09/1R) and “they know the child better than anyone,” (CD/DW/Autism/9/28/09/1S) therefore “it is vital that teachers truly listen to parents” (CD/DW/Autism/9/28/09/1V). The contact between the parents and a teacher can be achieved through many different means; one parent discussed how “we used to leave a daily notebook in our daughter’s backpack. Recently, I started it again to build communication so that I know what’s going on” (RT/SS/Autism/10/5/09/2W). In the view of a teacher a respondent commented, “I make regular phone calls home to relay information to the parents,” (CD/DW/Autism/9/28/09/1M) as means of staying connected with the student at home. “When parents share what their child is doing in the home setting, it sheds a new light on my view of the student” (CD/DW/Autism/9/28/09/1X).
The constant communication that occurs between teachers, professionals, and the students are also important to the development of the students Individualized Education Plan (IEP). One parent expressed the benefits of a positive relationship, “since we had a great relationship with the Special Education professionals, the IEP meeting were very helpful. We were all on the same page with the same goals” (RT/SS/Autism/10/5/09/2T). Another respondent discussed her opinion that “IEP meetings should be an open, honest meeting,” (CD/DW/Autism/9/28/09/1P) in which “all participants can discuss the progress as well as the current needs of the student” (CD/DW/Autism/9/28/09/1Q). The importance of communication within the IEP meetings is also visible by another correspondent, “During the IEP, I think my school does a great job listening well to families. They are the ones living with the kids twenty four seven” (RT/BW/Autism/11/6/09/3N). This ability to communicate for the betterment of the student is a reoccurring idea that has been found throughout our inquiries.
We have also found that not only is communication with the student and parents important, but the ability to communicate with other professionals and other teachers provides for the maximum support for students. Many of the parents we interviewed were also special education teachers or professionals, whom have knowledge of special education laws and procedures. One such respondent said, “Since I have taken special education law classes I understand the rights very well and know when the school does something wrong”(RT/BB/Autism/9/28/09/1U). The communication that occurs with such parents is important because they know the type of support and services their child is supposed to be receiving within the school system. Among teachers it is also important that communication occurs between faculty members, in order to fully benefit and provide for students with autism. “As a teacher, helping your staff learn what you’ve been taught and blessed with support from the parents, as well as the student is vital. It’s easier for people to have compassion this way” (RT/BW/Autism/11/16/09/3S). “We also work with the kindergarten teachers, for those students transitioning from the preschool, to see what our students need to work on” (CD/SR/Autism/11/19/09/4AF). Through the correspondence with other teachers, special education and regular education teachers are able to provide their students with the necessary support to reach their greatest level of academic success.
Within the area of academics comes the ability to transition among grades and from a special education class to a regular education classroom. According to one teacher, “transitions are usually not a big deal, but if a child has a rough time with transitions, then we use a picture schedule to display and prepare these students” (CD/SR/Autism/11/10/09/4AL). The students are better prepared for the emergence into a regular education classroom through preparations made by the teacher, for example one special education teacher provides support, “for transitioning student we send home a work book during the summer” (CD/SR/Autism/11/19/09/4AH). “The work book includes social stories and worksheet that will provide for a smooth transition when school starts again” (CD/SR/Autism/11/19/09/4AI). This teacher also established a positive and communicative relationship with her students and their parents through “encouraging my parents to work with students throughout the summer so that they can be prepared for the transition” (CD/SR/Autism/11/19/09/4AJ), whether it be to a regular education classroom or a change in grade level. Overall students with autism must face challenges within the classroom and find ways, through communication, to receive the necessary support and services in order to become academically successful.
The statistics for parents getting divorced that have children with disabilities is off the charts. We believe the main issue here is the lack in communication and agreement between the couple. The disagreement is usually based upon how to raise a child who is different than you would have expected. We must keep in mind all families will handle it in multiple ways. Both parents are going through most of the same emotions; they just need to be discussed. One correspondent stated, “It’s best to work as a unit; it is through working together that progress is made” (CD/MA/Autism/10-5-09/2CP). “It can affect the husband and wife because they can’t agree upon the help needed” (CD/MA/Autism/10-5-09/2CM). “It can end in divorce” (CD/MA/Autism/10-5-09/2CN). As we interviewed, we came to the conclusion it is easier said than done to give 100 percent every day and not give up. To love your child completely with patience is being the best parent you can be. “At times it would have been simpler to just walk away and quit, but especially with so many kids you can’t just walk away” (CD/MA/Autism/10-5-09/2CO). “I love my son, but sometimes I don’t like him, you need someone to be able to tell this to and have them understand”. (CD/MA/Autism/10-5-09/2CQ).
In a situation where divorce came out the child being Autistic, one respondent declared about her x-husband, “The differences we had on how we should approach our child’s behavior were vast. For example, he would think something our child was trying to communicate with us was pain, and I would think he would be laughing or something else. The difference in opinions can drive a wedge in marriages of children with disabilities”. (RT/BB/Autism/9/28/09/1AB). “His father is now remarried and has not seen our child with Autism in five years now. So, yes, having a child with a disability can break up marriages and I have seen it happen several times. The risk is much higher for divorce and disagreement”. (RT/BB/Autism/9/28/09/1AD).
What we took from this interview is to build up the relationship with your partner as strong as it can possibly be. We want to learn everything there ever is to know about them before having children. How could a couple be mature or ready to bring a human being in to this world, let alone one with special needs, if they aren’t financially and emotionally stable. This has made us think, if one of us had a child with disabilities, we would be completely accepting of them because of the positive outlook we have on it. It is so easy for parents to want an abortion or not know how to deal with a change of ideal plans they had in mind for their child.
From a Faith perspective, religion can be what keeps your marriage strong. If God is at the center, all of your worries and concerns about how to handle a child with disabilities can be reduced. In conversation with the grandmother of a child with disabilities, she stated, “They are very devout Catholics that call upon the Lord in their times of struggles. They just do the very best they can”. (RT/LG/Autism/11/19/09/5AR). The same respondent stated in conversation, “Parents need to remember they fell in love once too and have to have some alone time”. (RT/LG/Autism/11/19/09/5BC). The parents of the child cannot leave the child with just anyone, so the grandparents will take him and his brother for one weekend every month. They sincerely love spending time with the children, thus giving the parents a break.
“Families with autistic children have added daily stressors that many do not realize” (CD/DW/Autism/9/28/09/1A). The daily challenges of families with children with disabilities are often overlooked and not mentioned, it is through our inquiry of families that we have grown to better understand these daily factors that influence not only the child with the disability but influence their families and those around them. One respondent said “sometimes it can be exhausting, you are physically drained, mentally tired, and you must give repetitious reinforcement” (CD/MA/Autism/10/5/09/2EB). It is a never ending job, as parents the child must be receiving constant care and attention, this is often demanding as expressed by one parent in discussion of her son, “He has to have someone with him nearly all of the time”(RT/BB/Autism/9/28/09/1C). The constant strain of having a child with a disability however is not seen as a burden by a majority of parents, but rather a blessing. One mother stated of her son “He is not demanding, but we have limitations,” (CD/MA/Autism/10/5/09/2M) once again bringing to attention the stressors that affect these families on a daily basis, aspects we did not have a clear understanding of before. As one parent puts it, “I know someone with three autistic children….It’s a whole different world for that family” (RT/BW/Autism/11/16/09/3T). Truly it is a different world; there are certain things families have to take into consideration with having an autistic child.
One such aspect is the child’s inclusion into the family, for most autistic students their lack of social skills makes it challenging for children to form relationships within the family. One participant said, “I believe the best treatment is being integrated within the family,” (CD/MA/Autism/10/5/09/2AO) and this view is shared by most parents. “My son has to have his alone time” (RT/LG/Autism/11/19/09/5L) and while it is important to provide to the needs of the child it is also ideal to enforce inclusion within the family. One mother makes the importance of inclusion within her home very clear through her statement, “We would not divorce him from the family,” (CD/MA/Autism/10/5/09/2AN) meaning he is always included and a part of their family.
Families who are affected by autism must also take into consideration their child’s communication and social levels, and cater to the needs of their child. “For people with autism you cannot assume they understand and are able to fill in the gaps” (CD/MA/Autism/10/5/09/2AD) therefore, “you must be explicit with details” (CD/MA/Autism/10/5/09/2AE). One correspondent shared that “as parents, we are very literal with our son” (RT/BB/9/28/09/1AI) and this must be done for the best interest of their child. For another respondent she expressed her lifestyle of living with autism. “I live like an average person, I am high functioning. I have good friends and grades. It is just my emotion I have a really hard time controlling” (RT/BG/Autism/11/19/09/4F).
“As for limitations within the family, he is unpredictable,” (CD/CB/Autism/11/19/09/5BS) one respondent commented in regards to the limitations children with autism place on their families. Another parent commented in regards to these limitations as well, “There really aren’t many things we can’t do as a family anymore. We still do typical activities, they just may not last as long of time” (RT/SS/Autism/10/5/09/2AK). The constant adaptations that parents must make to accommodate their children, was also expressed as an overall demanding factor of having a child with autism. For one respondent “it gets more difficult the older we get to balance out a schedule, but it keeps us going, it keeps us young”(CD/MA/Autism/10/5/09/2DD). The limitations placed within families is due primarily to the behavior displayed by students with autism, one respondent emphasized this belief with her comment, “He just has unpredictable social behavior, it a problem especially when they’re young” (CD/CB/Autism/11/19/09/5BX).
The daily factors of life, also seem to have a big impact upon the life of children with autism and their families, it is often due to the ritualistic behaviors of these children that families experience difficulties and challenges within their daily lives. One participant displayed concern with her sons ritual of “almost always feeling comfortable wearing the color red” (RT/LG/Autism/11/19/09/5C) and the adaptations she has made to benefit her son. A majority of parents and family members addressed the concern of food as an issue within the home. “For dinner, he is very picky. If his mother makes his spaghetti with sauce, he takes each individual piece and dips it in a separate bowl of sauce” (RT/LG/Autism/11/19/09/5R), accommodations always have to be made. Another parent discussed the limitations her sons eating patterns had on their family, “This affects our family because we can never go out to eat. If we do, we have to bring food for our autistic son” (RT/BB/Autism/9/28/09/1AO). Still, other families discussed issues with food, a respondents grandson “went through a month with only wanting to eat French fries” (CD/CB/Autism/11/19/095K) and another mother talked over her son, “He has rituals and things he does, he doesn’t eat sandwiches, or he won’t eat hamburgers with a bun” (CD/MA/Autism/10/5/09/2AT). Due to such restrictions and limitations within these individual’s diets their families are impacted and forced to meet the needs of their child. Through our interviews we have been able to discover such issues and gain a respect and understanding for not only the child with autism but the parents, families, and teachers that work with these students on a daily basis and are affected by these factors.
Come to find out, the community can either be very supportive or very judgmental. The way that society portrays a child with disabilities is sickening in the sense of looking down upon them because they don’t fit the “normal” stereotype. On the other hand, there are excellent support and advocacy groups that invest a lot of time in to helping families of children with disabilities. One participant responded, “We are very active in ARC (Association of Retarded Citizens). This group puts on dances and parties” (CD/MA/Autism/10/5/09/2CS/DB). We can see how support groups within your district would be very humbling knowing people in close proximity of you are going through the same type of struggles. “Our district provides a parent support group for Autistic and other special needs families” (CD/DW/Autism/9/28/09/1AF). One participant responded, “We had a fundraiser a few weeks ago to raise money for the school and it was a Barbeque. We took the kids there for lunch, so they actually got to be a part of the fundraiser”. (CD/TB/Autism/11/17/09/3AJ). It is examples such as this that show true interaction and submerging the children in to community life.
As for the negatives, a mother of a child with Autism said in conversation, “The worst is cruel little kids” (CD/MA/Autism/10/5/09/2CY). Another participant said, “We need to accept them for who they are, no matter what the situation is” (RT/LG/Autism/11/19/09/5AF). “There are always strangers that will look at my grandson differently and be disgusted at him”. (RT/LG/Autism/11/19/09/5AX). “People blame his actions on Autism. But, he is a normal human being” (RT/LG/Autism/11/19/09/5U). What the community doesn’t realize is how badly the child wants to be accepted, but they can’t communicate that. It hurts the parents and people who care for the child so deeply when others look at them as if they are an alien or object.
Setting goals and attaining them is vital in taking steps towards success of a child with or without disabilities. “All of our students have unity goals, which are based upon the individual” (CD/TB/Autism/11/17/09/3AL). “Unity goals allow for the family to be involved and set goals for where they want their child to achieve (one student was to stay quiet in church). So, it also affects within the community as well” (CD/TB/Autism/11/17/09/3AM). “We truly encourage people to come in and sit and watch our session” (CB/TB/Autism/11/17/09/3AP). “There are some great families out there that are so strongly involved in the support groups for their child. We need more people to be light like them” (RT/BW/Autism/11/16/09/3Z).
One of the main things Autistic children struggle with is the deficit of social skills. Social skills come very hard for them. If teachers and family members work with the child daily, it will lead to self-confidence and increase in being socially aware. In conversation with a participant, they stated, “It is extremely difficult to teach teenage social skills” (CD/DW/Autism/9/28/09/1F). “Typical social skills for most may take years for an Autistic student to master” (CD/DW/Autism/9/28/09/1G). “He wants to talk with people and likes to talk about information he is comfortable with (president, weddings, gossip…etc) (CD/MA/Autism/10/5/09/2J). A grandmother of a child with Autism declared, “My grandson went home crying and he laid down on the grass and said, “I know I’m different, but they were mean to me, they don’t have to be mean to me” (CD/CB/Autism/11/19/09/5BB). “My personal thought is that we have gained more from him than he has burdened us”
(CD/MA/Autism/10/5/09/2Q).
“The best way to explain to my child was, ‘You do not communicate well with people’, this was the most simplistic way for him to understand”(CD/MA/Autism/10/5/09). As for another respondent, “Emotions like love, sadness, anger are too abstract” (CD/MA/Autism/10/5/09/2AG). “He likes to go into his room alone, but you know that everyone does that, so how is that so// different from any “normal” person?” (CD/MA/Autism/10/5/09/2AS). “The first time he meets someone he tries to give them a hug. I think it’s because he gets nervous and doesn’t know what to do” (CD/MA/Autism/10/5/09/2BG).
“Our younger son would tell people that our son with Autism was in a terrible car accident. This was his way of getting off the hook about him” (CD/MA/Autism/10/5/09/2BU). “It made it easier for our youngest son to create a disability in his own mind and after that no one bothered him about his brother (CD/MA/Autism/10/5/09/2BV). “His brothers and sisters get excited for our son. He is truly a special addition to our family” (CD/MA/Autism/10/5/09/2DP). “I really truly believe that our son with Autism has made us a really close family; our kids are always here if we need something” (CD/MA/Autism/10/5/09/2EF). “Both parents went through a divorce and are remarried, but the child with Autism didn’t’ seem to suffer because he leaned on his older brother” (CD/CB/Autism/11/19/09/5AU). “Our child with Autism is very scared of loud noises, especially thunder. One night it was thundering and lightening, and my daughter-in-law walked in to his room to check on him. She found the younger son crawled in to bed with his hands put over the child with Autism’s ears” (RT/LG/Autism/11/19/09/5AL). Family life is what builds the person’s character and molds them in to the person they will become. Families can learn so much by just having a child that may be different, but is hopefully respected and loved within the home. In the long run, we strongly believe it builds the children to be advocates and accepting of people who are not like them.
Finally, communication can be a huge block put up between someone with a disability and someone without. Whether it is the child with Autism not knowing how to communicate or the recipient not caring to listen, it’s a common issue. “At first they thought he was deaf because they talked to him and he never responded” (CD/MA/Autism/10/5/09/2CG). “Since my son does not have the ability to communicate with talking, he is very limited to social opportunities” (RT/BB/Autism/9/28/09/1AG). “But, in school he interacts just fine, especially in gym class. When he is paired up with kids who get to know him, he will follow them around and they will communicate through actions. He will never talk, but is takes familiarity for him to be comfortable around people” (RT/BB/Autism/9/28/09/1AH).
“My son has poor telephone communication and with people in general” (RT/BB/Autism/9/28/09/1B). “We use signing with him, but a special kind called CASE” (RT/BB/Autism/9/28/09/10). “Socially, we see her normal functioning classmates at Hy-Vee and they will always say hello. They’re very receptive to my daughter” (RT/SS/Autism/10/5/09/2AI). “In the case of a high functioning child that does well academically, it’s harder for people to understand their inability to communicate well-relationships. They choose to isolate themselves sometimes” (RT/BW/Autism/11/16/09/3R). We believe it’s easy for outside people to be confused on how to communicate in the proper way with children of Autism and catering to their needs. Poor telephone skills seemed to be a recurring thought for most of the people we interviewed as well.
In conversation with a teenager with Asperger’s disease, they said, “Sometimes I’ll get so mad I will yell at people for no reason. I want to let my anger out on something else but can’t” (RT/BG/Autism/11/19/09/4D). “I’ve been in fights with my extended family” (RT/BG/Autism/11/19/09/4S). “I told my parents I couldn’t go to any of the holidays because I didn’t want to risk not being able to control myself” (RT/BG/Autism/11/19/09/4U). “I apologized and they completely understood. All of my family knew I wanted to come, but couldn’t” (RT/BG/Autism/11/19/09/4V).
Having control over our actions is something cognitively normal human beings take for granted. A lot of times children simply have no control and act out in hurtful or extreme ways to try and communicate what they are feeling inside.
Where no direct treatments have been found to cure autism, there is the use of therapy that provides many benefits for students. In speaking to an applied behavior analysis (ABA) therapist she explained this therapy treatment, “ABA therapy uses operant conditioning to change the behaviors of students with autism”(CD/TB/Autism/11/17/09/3A). “With ABA the students are always working for reinforcements” (CD/SR/Autism/11/19/09/4P). Through the use of ABA therapy students go through “role play that helps with behaviors which limit the family,” (CD/TB/Autism/11/17/09/3N) and “works on daily routines or scenarios such as not running on the pool deck at the country club or with issues such as bed time routine and potty training”(CD/TB/Autism/11/17/09/3M). Families, through ABA therapy, are able to gain help in the aspects of their daily life that provide difficulties for their families, the therapy allows for autistic students to become better adjusted and adapted to the everyday life of their family.
Therapy can also help students within their social skills, in speaking to an ABA therapist at an autism school she commented, “We also work with students on their ability to imitate their peers, they are asked to imitate verbal and nonverbal actions” (CD/TB/Autism/11/17/09/3AF). “We call this observational learning, where we make sure the autistic student is learning from their peers…”(CD/TB/Autism/11/17/09/3AG). Improvement in social areas is important especially for autistic students because it allows them to make connections with those around them. Overall therapy has been found to be useful within the classroom and home, through the use of ABA therapy students are able to improve in daily skills and learn to interact more efficiently with their peers.
Throughout our inquiry of families who are affected by disability, specifically autism, we have gained an appreciation and understanding not only for the student but for their families and those who influence their lives on a daily basis. We were able to gain insight into the everyday lives of such families, and learn of the daily challenges and struggles they face. Through the interviewing process we were able to personally connect and communicate with families, who shared personal information and stories as a means of providing us with a greater understanding of their lives. With this gained insight, we were able to gain compassion and learn the best means to interact with students with autism. This opportunity has been one that has provided much enjoyment for both of us and ultimately will be beneficial to us future educators.